autism - a blessing in disguise
We spent the entire day yesterday going to another doctor, but it was not very productive. The doctor was terrific, a really nice fellow with a cool accent, but he too says there isn't much that can be done beyond what we have done to date.
To date: Emory Autism Center diagnosis. Medical testing and follow up with blood work, neurology and all that jazz. More diagnosis info and confirmation of the diagnosis by experts. More advice on what to do but little help to get it done.
School - what a pain! We have tried so hard to keep the "positive" attitude and to deal with folks that just don't understand the diagnosis with mixed at best and miserable at worse results.
Church - we attend church every service - even Sunday evening and Wednesday's. Most often we take our child with us and hope that he doesn't upset someone else.''
Home - our entire life revolves around the child. Sleep, eat, everything is based on the needs of this child. Our social life went up in flames. Even family members have a difficult time understanding the problem and behavior of this child so why would I expect the educational system or governmental systems to understand what he needs or how to relate to a child that is so hard to relate to.
I have been thinking, it is time that we parents and grandparents come together. I have read all the sites and literature and I don't see a lot of real time info - facts, figures, etc - but not real time events. I can't fight the school system alone. They don't want these kids in the system. The new voucher law for Special Ed might be a benefit - if we ever get private schools up and running that can really help our kids, but until then what do we do?
I have real time stories and events that makes even the doctors angry, but the schools are not accountable. They isolate us as parents so that we can't talk to each other. Pcom is a forum where we can come together and educate each other and others.
My children are wonderful kids - a little weird and yes, they can be behavior "problems" because of a disability, not because of bad parenting or because they are bad kids. Why oh, Why can't I make the system understand the problem is with their system and old way of dealing with kids not the kids?
When time goes by and instead of 13% disablied in a school becomes 25% or more per school - inclusion won't work. Typical, accepted behavior intervention techniques won't work with autistic kids - if anything it makes them worse! Educationing thru tests won't work and all that paperwork required to document the "bad behavior" is unrealistic and will become overwhelming. What then? Oh, yeah! The new voucher program.
Okay, anybody out there ready to open a special ed school just for autistic children - a wide range of disabilities - for $9000 per student, per year? If so, give me a call. I'm ready to enroll your first student.
As to reality - lets band together and try to figure this out so that as a collective group we can accomplish real things. How many autistic children are in this county? How many parents/guardians/grandparents are trying to work thru the system to provide for their children? What is the future of these children? Can they function in the real world when the elementary/middle school world rejects them now? Let's discuss.
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